Journal of Policy and Practice in Intellectual Disabilities最新文献

We describe the healthcare system for people with intellectual disability (ID) in Spain. First, we provide general population statistics before focusing on the most recent prevalence data related to people with disability in general, and with ID in particular. We also discuss how health care is organized. Most of the Spanish population is covered by the public healthcare system, which is structured into primary care (first-level health services; easily accessible and capable of tackling the most common ailments) and specialized care (second-level health services; comprising the most complex and costly diagnostic and therapeutic resources). We then explain Spain's primary legislation that promotes the rights of people with disabilities, highlighting the importance of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which is enshrined in the Spanish General Law on the Rights of People with Disabilities and their Social Inclusion (Royal Legislative Decree 1/2013). Second, we describe the organization of Spanish disability support and health services, whose regulation is highly complex given that the autonomous regions set their own rules about coverage, services, and financing. Third, we present some recent studies that allow a better understanding of health care for people with ID in Spain, including a summary of the ongoing #Rights4MeToo project. We report specific data on the right to habilitation/rehabilitation. People with ID and professionals providing them with supports agreed that the most problematic aspects of health care for people with ID were the lack of: coordination across services, user-friendly information to maintain or improve their health, psychological treatments, preventive medical check-ups, and knowledge about disability among health professionals. There is a need to give people with ID priority access to services, reduce waiting times, increase the length of medical appointments, and create protocols and prevention campaigns targeting them.

Siblings' interactions and shared experiences influence their perceptions of quality of life. Recently, research about siblings of children with intellectual and developmental disabilities has been significantly expanded but data from Southern European countries is still missing. This research was carried out in Catalonia (northeast Spain) a region in the Mediterranean area with its own shared culture, language and traditions that equally embraces an important diversity of ethnicities and cultures. The main aim was to collect siblings' perceptions on quality of life from siblings' own voices. Semi-structured interviews were conducted with 14 siblings aged 5–11 years old and thematically analyzed using the following domains: joint activities; mutual understanding; private time; acceptance; forbearance; trust in well-being; exchanging experiences; social support; and dealing with the outside world. Siblings reported a variety of experiences in relation to having a brother or a sister with intellectual and developmental disabilities (I/DD), including unique characteristics of their quality of life perceptions. There were also some common factors amongst the siblings' experiences, such as the importance of being able to communicate properly with their brothers or sisters with I/DD. It emerged that having their own time with their parents was an important factor in their own development. This research echoes some siblings' beliefs that society needs to provide a conscious revision of values and ideas regarding disability. Implications for research and practice are described.

It is increasingly recognised that many people with intellectual disabilities suffer from post-traumatic stress disorder (PTSD). Eye-movement desensitisation and reprocessing (EMDR) has been proposed as a potentially helpful intervention that is less reliant on verbal skills than other effective treatments for PTSD and therefore could be more effective than verbal interventions for people with intellectual disabilities. The Trauma-AID project is a randomised clinical trial (RCT) evaluating the effectiveness of a bespoke EMDR protocol for adults with intellectual disability and PTSD, which incorporates a prolonged phase of Psycho-Education and Stabilisation (PES) prior to the trauma confrontation phase of EMDR. The COVID-19 pandemic struck during the feasibility phase of the Trauma-AID project, necessitating a second feasibility study to evaluate the acceptability and feasibility of remote or hybrid delivery of the PES + EMDR protocol. To this end, we conducted two online surveys of therapists followed by interviews with clients, carers and senior therapists. The surveys were analysed descriptively. Content analysis was used for client and carer interviews, and framework analysis for therapist interviews. All stakeholders reported positive experiences of EMDR; however, some challenges were identified. The majority of clients, carers and therapists interviewed reported that the intervention, whether PES alone or the full PES-EMDR package, had improved symptoms of PTSD and psychological well-being, and carers also reported decreases in challenging behaviour. A full account of the data is provided in four Supplementary Digital files. PES-EMDR therapy appears both feasible and acceptable for clients with intellectual disabilities and therapists, whether delivered face-to-face or in a remote or hybrid mode, though remote working appears easier for the PES phase than the EMDR phase of the intervention.

Few healthcare providers receive guidance on the unique needs of persons with intellectual and developmental disabilities and mental healthcare needs. Our aim was to develop a tool for health care providers to use as a guide to address the complex needs of this patient population. The development of the Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities consisted of five steps: focus groups, draft of the guidelines, evaluation of the guidelines, finalization, and dissemination of the guidelines. The focus groups revealed themes in five domains: (1) relationships, communication, and openness; (2) understanding the person, their environment, and culture; (3) importance of an integrated care and wellness approach; (4) consideration of treatment modifications; (5) recommendations from focus group participants regarding the guidelines. These focus groups informed the development of the guidelines. Forty-three prescribers evaluated the guidelines noting multiple strengths and some recommendations. Based on this feedback the guidelines were modified as needed, finalized, and disseminated. This paper describes the development of the Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities. An evidence-informed, easy-to-use, web-based guide with links to best practice resources. These guidelines incorporate integrated health, other mental health approaches, and the input of patients.

People with intellectual disabilities (ID) experience high levels of psychiatric comorbidity and difficulties accessing services, particularly in rural areas. An Intellectual Disability Mental Health Outreach Clinic was established to provide specialised psychiatric care in rural Australia through telepsychiatry and in-person assessment. The study aims were to (i) contrast the characteristics of clinic attendees assessed by telepsychiatry or in-person; (ii) assess the feasibility of care delivery by synchronous videoconference (telepsychiatry) or in-person; and (iii) assess acceptability to, and experiences of, participating carers (family members, non-government organisation workers or Community Mental Health Case Managers). An audit of clinical records was conducted of clients reviewed by the Clinic between August 2018 and April 2021. A survey of carers, either employed or family members, evaluated Clinic acceptability and experiences with the Clinic assessment, and as well as perceptions of thoroughness, accessibility, and ease. Of 145 people with ID, 46% were reviewed by telepsychiatry. These 67 telepsychiatry clients were more likely to have milder ID (p < 0.01) and were seen more frequently (p < 0.05) than the 78 clients with in-person reviews. Results from the carer survey (31.7% response rate, n = 46/145) indicated high overall service acceptability, with telepsychiatry perceived to offer more convenient appointment times (91% agreed vs. 75% of in-person, p < 0.05). The high uptake of telepsychiatric review indicates that it is feasible and acceptable to carers of people with ID and comorbid mental health concerns. Telepsychiatry is a potential tool to address equity of access to mental health services for people with ID—particularly those from disadvantaged and rural populations.

Genetic variations are overrepresented in people with intellectual disability (PwID), particularly those with physical and mental health co-morbidities, but remain significantly under-diagnosed. Lack of suitable research studies, a natural extension of the complexities posed of consenting and recruitment is considered culpable. There is a resultant dearth of evidence on establishing bespoke genetic studies for adult PwID. This report outlines the challenges faced in the implementation and administration of a pilot genetic study for adult PwID hoping to better inform future genetic study designs for PwID. Adult participants with a diagnosis of ID (ICD10 F70-F73) and epilepsy (ICD10 G40) were recruited to The Peninsula study exploring genomic stratification in intellectual disability and epilepsy via the ethically approved Royal Devon and Exeter Tissue Bank (RDETB) (16/SC/016). Managed within the National Institute for Health Research (NIHR) Exeter Clinical Research Framework, the RDETB was set up to proactively collect and store ‘spare’ tissue from routine clinical procedures such as venepunctures for routine good practice biochemistry monitoring. Participants who satisfied the criteria for the need for routine bloods to monitor their general health were identified to be invited for participation. From October 2017 to March 2020 from a total caseload of 375 PwID and epilepsy, 291 were screened (77.6%), 116 (39.9%) identified as potentially eligible and sent study information and genetic samples obtained from 30 (8%). Analysis showed 75% of PwID had some biochemical abnormalities requiring further medical attention. The recruitment was influenced by the clinical care set up in implementing the sanctioned ethics. However, where bloods were achieved it proved to be beneficial in identifying hitherto undiagnosed medical problems. While the challenges to gain consent, are considerable, the reasonable adjustments needed to facilitate participation and the immediate clinical benefits where engagement was successful are significant.

The transition from adolescence to adulthood is difficult for individuals with autism spectrum disorder (ASD) and their families because they must learn to navigate the complex adult disability service delivery system. For Latinx (vs. White) families of youth with ASD, this period is especially difficult because of the systemic barriers (e.g., language and cultural differences) they face when accessing services. To support Latinx families, effective and culturally responsive supports (e.g. culturally tailored programs) are critical. To this end, the purpose of this study is to describe the cultural adaptation of a transition planning program (i.e., ASSIST) for Latinx families of youth with ASD. First, we culturally adapted the curriculum using the Ecological Validity Framework (Bernal et al., 1995) and the Cultural Sensitivity (CS) model (Resnicow et al., 1999). Then, we presented the culturally adapted curriculum to eight Mexican–American caregivers of youth with ASD. Specifically, we conducted three individual interviews with each participant (N = 24 interviews altogether) to examine their perceptions of the six sessions of the culturally adapted curriculum. Based on their feedback, changes were made to the curriculum. Overall, participants reported positive perceptions of the culturally adapted curriculum, but suggested the following recommendations: include information related to mixed-status families, add information about guardianship, and use the translation technique of borrowing for specific terms. Based on the findings, implications for research and practice are discussed.

Internationally, it has been recognized that parent involvement is an essential component of the special education process for children with intellectual and/or developmental disabilities (IDD). Parent involvement often includes parents advocating for their children. However, many parents face barriers when advocating to obtain appropriate special education services for their children with IDD. In the United States, Latinx families face greater systemic barriers (e.g., language and cultural differences) to access services for their own children with IDD. To this end, parents may turn to parent advocacy training programs to learn about special education and feel empowered to advocate for school services for their own children and other families of children with disabilities. Yet, it is unclear how Latinx families advocate for services for their own children and for other Latinx families of children with disabilities after attending an advocacy program. We designed a study to explore the advocacy experiences of eight Latinx families one year after attending an advocacy program. Participants reported that they used three advocacy strategies when advocating for their own children with disabilities: knowledge of special education law, non-adversarial advocacy strategies, and requests for data. Notably, some participants reported not having an advocacy experience due to the COVID-19 pandemic. Implications for research and practice are discussed.